The Story of Neil

A little about us that you should before we begin -

I am Nisha.

Married to Jerrin.

And this is the story of our little warrior.

I am a Hindu, a Tambrahm.

Jerrin is a Roman Catholic.

Our journey of becoming one… was a story in itself.

We met.

We fell in love.

And then we fought.

For five years.

Five years of convincing, waiting, holding on, and choosing each other again and again until our families finally gave us the green signal to get married.

Those five years shaped us.

They tested us.

But they also taught us something we carried into every phase of our life after that.

That we are in this together.

We took our vows, in happiness, in sadness, in health, and in sickness… not fully knowing then that “health and sickness” would come to mean something far beyond just the two of us.

And then…

life gave us Neil.

There are moments in life that arrive quietly, almost casually, and yet, in hindsight, you realise they changed everything.

14th March 2024 was one such day.

I took a pregnancy test.

And I saw those magical two lines.

I couldn’t believe it.

I took another test.

And then another.

Two lines. Again.

And yet… I wasn’t ready to accept it.

So I made Jerrin take the test.

Just to check if the strips were actually working.

Looking back now, it feels almost funny.

But maybe that was our baby already.

Making us do things no one would imagine.

Making his presence known in his own way, right from the very beginning.

We discovered we were no longer just two.

We were becoming three.

There was no dramatic reaction, no overwhelming rush of emotion in that instant. Just a strange pause. A silence filled with disbelief, joy, and the weight of something we couldn’t yet fully understand.

We had just returned from Rajasthan and Delhi, celebrating the wedding of someone close to us, completely unaware that through that entire journey, a tiny life had already begun its own journey within me.

Life had already moved ahead of us.

The months that followed felt gentle. Comforting. Almost kind.

There was rhythm in our days, a quiet sense of responsibility in everything we did. Jerrin and I went about our routines with a shared awareness that every small decision now mattered.

We weren’t just living for ourselves anymore.

We were carrying someone with us, in every step, every choice, every breath.

We were careful.

We were hopeful.

We were happy.

And like most parents-to-be, we imagined a full-term journey. We read, we planned, we looked forward to milestones we thought we understood.

But life doesn’t always unfold the way you prepare for it.

On the morning of August 31st, 2024, everything shifted.

It was an ordinary Saturday. The kind of morning you don’t expect anything significant from.

We sat down for tea, speaking about mundane things. I remember casually asking Jerrin to clean the fridge, clearing out what we didn’t need, preparing for the week ahead. Our parents were to arrive soon. The house was getting ready for the Seemantham planned on 8th September.

We were preparing to celebrate.

Instead, life decided to move faster than we could.

Unexpectedly, my water broke at home.

There was no panic at first. No sense of urgency. I remember thinking this was probably something minor, something the doctor would check and send us back home for.

I even took a bath.

I got ready slowly.

Unaware that we were already stepping into a completely different reality.

When we reached the hospital, the words came quickly and without cushioning.

“You are in labour. You need to get admitted right now.”

What followed was not what we had imagined for ourselves.

There was no calm transition into parenthood.

There was anxiety.

Uncertainty.

And a kind of fear you cannot prepare for.

The doctors explained the plan, to delay the delivery as much as possible. To give our baby more time. More strength. More chance.

The next 24 hours were intense.

Magnesium sulphate.

Steroid injections.

Monitoring.

Waiting.

Hoping.

We held on to every extra hour we could give our baby.

Four days passed like this, stretched between hope and helplessness.

Until the moment came when the doctors had to make the decision for us.

My amniotic fluid had almost depleted.

My CRP levels had risen sharply.

The risk of infection was too high.

To protect him… they had to bring him out.

On 5th September 2024, at 11 a.m., I was taken into the operation theatre.

The anxiety was different now. Heavier.

We didn’t know what to expect.

We didn’t know what waited on the other side.

All we knew was this, we just wanted our baby to arrive safely.

At 12:04:54 p.m., our son entered the world.

And in that moment… everything changed.

I still remember his cry.

Strong. Clear. Alive.

I remember the doctor’s voice, steady and reassuring,

“It’s a boy. He is crying very well. Don’t worry.”

That cry became our first anchor.

Because here’s the truth no one really prepares you for.

Premature birth is a world of its own.

When you’re expecting, you read about full-term pregnancies. You prepare for due dates, hospital bags, feeding schedules, first nights at home.

You think you know what’s coming.

But almost no one prepares you for what happens when your baby arrives early.

There are fewer conversations.

Fewer stories.

Fewer guides to hold your hand through what comes next.

And maybe that’s why, when it happens, you step into it unprepared.

Unsure.

Overwhelmed.

But sometimes, the most unexpected beginnings create the most extraordinary journeys.

This is ours.

This is the story of Neil Saiesh.

A lifetime in eighteen months.

A story of strength.

Of resilience.

Of a little boy who came early… but lived fully.

And this is where it begins.

NICU - A place that changes you. Inside out.

You walk in as a parent, but you don’t walk out the same person.

Because inside those walls, you see everything.

You see babies thriving.

You see babies not thriving.

And the hardest part is this, you never know which side you are on… until you are in it.

Since Neil was born two months premature (31+1 weeks), he was taken straight to the NICU after birth. His tiny organs needed support. Time. Care.

And so, our journey as parents began… not with holding him, but with watching him through glass.

I had a C-section birth. And I was told I could only see my baby the next morning (6th September 2024).

Jerrin had already gone into the NICU. He had seen him. When he came back, he was happy. Excited. Almost glowing. He showed me videos of our little boy, tiny legs kicking, small hands moving, alive in ways that instantly filled the room with hope.
I watched those videos again and again.

But it wasn’t enough.

I wanted to see him.

I wanted to touch him.

I wanted to hold him.

I wanted that warmth.

I wanted to see what we had created.

But the wait felt endless.

They say a C-section is a major surgery. Your body needs rest. Time. Care.

But none of that mattered to me at that moment.

The physical pain… it was nothing compared to the anxiety. Everything else faded into the background. There was only one thing that mattered.

Getting to him.

The next morning, the doctor asked me to start walking. I didn’t hesitate. Every step hurt. But I took them anyway.

Because each step meant I was getting closer to him.

Closer to my baby.

Closer to my miracle.

Closer to my Neil.

Quick side story of his name - Neil Saiesh:

We named him Neil Saiesh.

That name carried more thought, more meaning, than we had ever imagined a name would.

We had a mix marriage (Hindu-Christian). And naming our baby was not just about choosing something that sounded right. It had to feel right. It had to belong to both of us. It had to honour both our faiths, without taking away from either.

We wanted something neutral.
Something meaningful.
Something that would stand beyond religion, and still hold both our beliefs within it.

And so came Neil — a champion.

And Saiesh — a coming together of Sai Baba and Eshu (Jesus Christ).
Two forms of faith that we both held on to, deeply and completely.

Maybe Neil was always God’s child.

And in every way that would unfold ahead…

he was an undefeated champion.

Coming back –

I entered the NICU.

The protocols. The hand wash. The sterile silence. Everything felt slow. Heavy.

And then…I saw him.

My tiny piece of joy. My wonder. My everything.

He was perfect. Perfect in ways I cannot even define. Perfectly formed. Perfectly moving. Perfectly crying.

He was beautiful.

I touched him.

nd in that moment, it felt like a lifetime of joy rushed through me.

There are no words for that feeling. None that can truly hold it.

But alongside that joy… there was something else.

Something I was not prepared for. 

He was covered in tubes. Connected to machines that made sounds I did not understand but could not ignore.

Monitors beeped constantly.

His heartbeat flashed across a screen.

There was oxygen support helping him breathe.

He had PICC lines running into his tiny body, carrying medicines meant to keep him safe.

His little toes…They had blood spots. Marks from where blood was being drawn, again and again, to check if everything was okay.

He was so small. And yet, he was already enduring so much.

And then came the reality check.

When your baby is born prematurely, you are not prepared for what your own body might not be ready for.

No one tells you that you may not lactate immediately.

No one prepares you for that gap.

There is so much information in the world. So much guidance for full-term pregnancies.

But here… there was silence.

We were told our baby needed feeds.

The hospital mentioned donor milk.

But it was not strongly insisted upon.
There was no pause to help us understand what it truly meant. No time to think. No guidance on how critical that choice could be.

And the reality we later discovered was even more difficult.

Donor breast milk through the Milk Banks are not easily accessible.

Milk banks, at least in Bangalore, are extremely unorganised.
They run on very limited stock.
Access is not immediate.
Priorities are set internally, and unless you push, insist, and follow up relentlessly, you may not even get a small quantity.

We didn’t know that then. We didn’t know we had to fight for it.

We didn’t know that even getting 50 ml could require effort, awareness, and urgency from our side.

And in that moment, when everything was happening so fast…

Formula was suggested.

Our baby needed to be fed. So we said yes.

At that point, we didn’t know what else to consider. We didn’t even know what questions to ask.

We were just parents trying to do the right thing.

Looking back, this is not about regret.

This is about awareness.

Because this is a reality that needs attention. No parent in that situation should be left uninformed or unprepared when it comes to something as critical as feeding their premature baby.

The days that followed became a routine we never imagined.

Morning visits to NICU.

Evening visits to NICU.

Standing beside his incubator.

Touching him softly.

Speaking to him gently.

And then leaving.

Leaving him there.

Leaving our piece of joy behind in that room with doctors, nurses, machines.

Walking away from your own child…That is something no parent prepares for. But we learned.

Day 5 of birth.

A day we never want to relive.

We were told three words.

*Necrotising Enterocolitis. NEC.*

Words that meant nothing to us at that moment.

Words that would come to mean everything.

NEC is a serious condition seen in premature babies, where the intestines become inflamed and can start getting damaged. In severe cases, parts of the intestine can even perforate. It can escalate rapidly and become life-threatening.

But at that moment, we didn’t know the depth of it.

Not yet.

Things escalated quickly. A paediatric surgeon was called in.

He walked in, looked at the X-ray, examined Neil, and then turned to us.

“The clinical condition and the X-ray are not matching. But the X-ray looks bad. The intestines may already be perforated. We need to stop feeds immediately. He can only be fed through IV.”

Our world stopped.

We didn’t understand everything he said. But we understood enough. Something was very wrong.

From that moment, everything changed. The NICU was no longer just overwhelming. It became terrifying.

From Day 7 to Day 12, our baby was NPO (Nil per Oral) – meaning he was not given any feeds and all the nutrition to him was provided through IV line placed on his tiny hands and feet.

Day 12 of birth.

By now, we had learned to fear the next update.

And this one confirmed it.

We were told his condition had deteriorated. There was fluid collecting in his abdomen. He needed immediate drain placement.

Which meant one thing for him…

More pipes.

More tubes.

More pricks.

We were not prepared for this.

We had imagined bringing him home.

Holding him.

Living life with him.

Instead, we were watching him fight for his life.

And somewhere in the middle of all this…

Guilt took over.

What did we do wrong?

Where did we go wrong?

Could we have done something differently?

These questions didn’t come once.

They stayed.

They grew.

They consumed.

The medical world spoke a language we were still trying to understand.

Every day, a new term.

Every day, a new update.

I remember the NICU rounds. Doctors would walk from baby to baby, smiling, reassuring other parents, sharing progress. And then they would come to us.

“Baby of Nisha… things look a little bad.”

That expression and the sentence stayed with us.

And then came another.

“He may need immediate ventilation.”

And just like that…

He was ventilated.

Machines began to breathe for him.

That night…

We sat outside the NICU.

The whole night.

Not knowing what to say.

Not knowing what to do.

Just crying. Just praying.

Because at that point, prayer was the only thing we had left.

That night changed us.

Until then, we were new parents trying to understand an unfamiliar world. But that night, we became something else.

Parents who understood that love is not always about holding your child close.

Sometimes, it is about standing outside a room, completely helpless, and still believing with everything you have that your child will make it through.

Neil was only days old.

And yet, he had already faced more than most do in a lifetime.

Machines were breathing for him.

Tubes surrounded him. Numbers defined his every moment.

But beyond all of that…There was something no machine could measure.

His will.

Because even in that tiny body, in that overwhelming silence of that night…He was still fighting.

And as long as he was fighting… we knew this story was far from over.

The next morning, we stood in the NICU waiting for the doctors.

Not just waiting.

Hoping.
Holding our breath.
Waiting for one sentence that would tell us we were not losing him.

The doctors came and spoke to us.

“His BP was wavering through the night… but it has settled with medications.”

That one word.

Settled.

We held on to it.

“He is doing better on ventilation.”

Better.

Another word we clung to.

They went on to explain.

The abdominal distention had reduced.
The drain had worked.
The collected fluid was coming out.

“For now… his intestines have a chance to heal.”

For now.

That is something the NICU teaches you very quickly.

Nothing is certain. Everything is for now.

He was still kept NPO – Nil Per Oral.

No feeds.

Nothing going into his stomach.

Because his intestines were too fragile to handle anything.

All his nutrition was being given through an IV line.

That is called TPN – Total Parenteral Nutrition.

Which means his body was being fed directly through his veins.

Proteins. Sugars. Fats. Everything.

Bypassing the gut completely.

Because his gut… could not function.

As a parent, you imagine feeding your child.

Holding them. Nursing them.

Not watching nutrients go into their bloodstream through tubes.

You can read more about TPN in this link here – https://my.clevelandclinic.org/health/treatments/22802-parenteral-nutrition

And then came Day 17.

“Let’s restart feeds.”

It felt like life was being handed back to us.

We were still struggling to find donor breast milk.

We finally found a provider… it felt like a blessing.

Because my own milk supply had still not caught up.

They started slow.

Tiny amounts.

Watching every reaction.

“He’s tolerating.” Meaning… his body was accepting it.

His NG tube was removed.

He was given palada feeds.

They spoke about latching.

For the first time…

we allowed ourselves to believe.

And then came a moment I had been waiting for since the day he was born.

People say Kangaroo Mother Care is everything for a newborn.

Skin to skin. Warmth. Bonding. Regulation. Safety.

But with Neil, I did not get that when he was born. There were too many tubes, too many lines, too many interventions between me and my baby.

28th September 2024.

“Let’s try Kangaroo Mothers’ Care.”

Carefully… with tubes still running…
I lifted him. And placed him on me.

His tiny head rested on my chest.

His tiny hands moved…

and then he slept.

Like he had found home.

For that moment…

there was no NICU.

No machines.

No fear.

Just me…and my baby.

About a week from then…things started feeling lighter.

He was feeding well.

He was passing stools.

His body was responding.

For the first time… things felt normal.

We even tried KFC (Kangaroo Fathers’ Care). Jerrin placed him on his chest and Neil and him slept to glory. It was a moment to cherish!

At that point, the doctors told us something we had been waiting to hear.

They said the NEC infection seemed to have settled.

That word… settled… felt like we had finally come out of the storm.

But they also added something we didn’t fully understand then.

“Now we need to watch for NEC sequelae.”

And then It was Dussehra.

We got him a tiny cute dandiya outfit. Dressed him up in the NICU.

And then the doctors said it. “Looks like Neil is going home soon.”

His lines were being reduced.

Fluids were being tapered.

They were just keeping access… in case medicines were needed.

We were elated.

We started preparing.

We thought this was it.

That these struggles…

were behind us.

But life…

has a way of reminding you…how fragile everything is.

Sequelae… a word we had never heard before.

We later understood what it meant.

Even when NEC infection settles, it doesn’t always leave the intestine the way it was before.
It can leave behind scars. Narrowed segments. Areas that don’t function normally.

And those after-effects… are called sequelae.

At that moment, it didn’t feel threatening.

It felt like a precaution.

Something to just “watch.”

We didn’t know then…

that we were not done with NEC.

Not yet.

Day 34

We walked into the NICU.

And something felt wrong.

You don’t need reports.

You don’t need doctors.

Your body knows.

His NG tube was back.

His IV line was reconnected.

TPN was running again.

The nurses wouldn’t look at us.

That silence…is something you can never ignore.

We found the duty doctor.

“He has been vomiting.”

“All feeds?”

“Yes. Everything.”

They even tried continuous feeds.

1 ml over 1 hour.

Even that… wasn’t staying.

And then came the words.

“Abdomen distention is back.” “Tight.” “Shiny.”

And in that moment… our fear went back to one place.

NEC.

“Is NEC back?”
That was the only question we could ask.

The doctors explained.

“It may not be active NEC again… but NEC can leave sequelae.”

They told us that sometimes after NEC, the intestine develops narrow segments or strictures.

Which means parts of the intestine become tight… restricted…and food cannot pass through normally.

That leads to…vomiting, distention.
and what we were now hearing again…

bowel obstruction.

But something inside us knew…

time was not on our side.

Because we had already seen how fast things could change.

And this didn’t feel like something that was going to settle quietly.

This time… we understood the seriousness.

They explained.

A bowel obstruction was suspected. Which means the intestine was not allowing anything to pass.

The intestine is supposed to move food forward. Step by step.

But when there is a blockage…

nothing moves.

Milk stays. Pressure builds. The abdomen swells. The baby vomits.

And inside…damage starts.

In a premature baby…

this can turn critical very quickly.

We stood there.

Emotionally drained.

And then came the word we feared.

“Surgery.”

I remember asking…

“On him?” “He’s just 2 kilos…”

The doctor looked at us and said…

“We don’t have a choice.”

They explained the procedure.

Laparotomy.

An open surgery.

They would cut open his abdomen. Go inside. Find the damaged parts of the intestine. And remove it.

Remove.

That word stayed.

His CRP (infection marker) had reached 75.

Normal is 0.5.

That meant infection was spreading fast. Time was clearly not on our side.

Day 35 – The day we sent our baby…for his first surgery.

Consent forms were placed in front of us.

You don’t read those forms.

You feel them.

Complications. Risks. DEATH.

And then… a blank space. For your signature.

No parent should ever have to sign that.

But we did. Because we had no choice.

They started preparing him and then they took him. Into the OT. The same OT where I had delivered him!

We sat outside. Five hours. Five hours of not knowing if your baby will come back.

At 6:30 p.m…

the surgeon came out.

“The last part of his small intestine… had perforated.”

Perforation means a hole had formed. Which means everything inside the intestine…leaks into the abdomen. Causing infection.

“They had to remove 10–15 cm.”

A newborn’s small intestine is only about 100–120 cm long. It has three parts. Duodenum. Jejunum. Ileum. Each part absorbs different nutrients.

And Neil had lost a small part of that system.

And then came the next word.

Stoma.

His intestine was brought out through his abdomen. An opening created on the skin.

His colon… also brought out separately.

Which meant… his digestive system was now disconnected.

Waste would pass into a bag outside his body. This is done to allow the inside to heal. Once the inside is healed, it would be reconnected back the way it is required to function.

But for us…it felt like everything inside him had been turned inside out.

He came out of surgery. He cried.

And that cry…felt like victory.

But the fight…was just beginning.

Days passed.

No stool.

No movement.

The stoma wasn’t working. “Intestines take time after surgery.”

We waited.

5 days.
6 days.
7 days.

Nothing.

He was crying. In pain. And Surgeon was called again!

And we were back…at the edge.

Day 43 – The day everything came back.

“Abdomen distention.”
“Obstruction.”

And in that moment… we didn’t hear new words. We heard something old.

Something we thought we had already crossed.

NEC.

The same word. The same fear. The same shadow that had once taken over our lives…

was standing in front of us again.

We had been told it had settled. We had been told we were now only dealing with sequelae.

After-effects.

Something manageable.

Something we could “watch.”

But this…this didn’t feel like sequelae anymore.

This felt like something had returned. Stronger. More unforgiving.

The doctors said what they had to say.

“The abdomen is distended again.”
“There is obstruction.”
“We cannot understand fully from outside.” “There is only one way to know.”

“We need to open him again.”

And just like that…

we were back at the same place.

Second surgery.

Within a week.

We didn’t ask questions this time.

Because we already knew the answers.

We signed. Again.

He was taken into the OT.

And when the surgeon came out…we didn’t need explanations. We saw it on his face. He was not able to make an eye contact with us.

Then came the words.

PAN NEC.

Not a part. Not a segment. The entire small intestine.

Gone. Destroyed by the same infection we thought had settled.

And in that moment…

everything the doctors had said earlier came back to us.

NEC doesn’t always end when it “settles.”

Sometimes it hides.

Sometimes it scars.

Sometimes it comes back in ways you don’t see coming.

And for Neil…

it had taken everything.

We didn’t ask about intestine.

We didn’t ask about survival rates.

We didn’t ask about medical terms.

We asked one thing. “Is Neil okay?”

And the answer…

was the one that broke us completely.

“He is okay right now… but not for long.”

And then came the words… no parent should ever hear and be given a choice about.

“Take him home… or Sign consent to stop care.”

We were being asked…

to let him go.

That was the choice we were being given.

Not how to save him.

How to let him go.

Our world shattered.

How do you decide something like that?

How do you make a choice between your baby dying in transit and your baby being withdrawn from care in a hospital bed?

It was my Neil.

I had seen him cry.
Seen him move.
Held him.
Felt him.
Loved him.

And now we were being asked to decide how he should die.

The doctors wrote their counselling notes and stepped away. A few others stayed back to console us. One of them said something I still cannot believe was said aloud.

It is okay. It is good that he goes now. At least you are not attached to him.

Not attached???

Neil grew inside me. He was a part of me. What did they mean not attached?

I was angry. I was shattered. I was crying. I was screaming. I was cursing myself, cursing fate, cursing whatever cruel hand had written this for us.

I called my parents and gave them the news. Devastated, they came to the NICU.

Since Neil had gone directly to the NICU after birth, no one in the family had really seen him properly.

My mother & father went in to see their grandson for the first time knowing they were being told he would not be alive much longer.

My mother came out furious.

She had seen him. She had seen how perfect he looked. She could not accept that a baby who looked so beautiful, so complete, so alive, could be declared beyond saving.

She raged out of the hospital saying she could not watch this and just leave it there. Somewhere inside that fury, she and my father did something none of us had thought of in that moment.

They searched.

They Googled.

My mother kept asking one question:

Isn’t there any possibility to save him?

Somewhere in that desperate search, she found a number online. My father immediately dialled, and someone answered. That person gave him the number of a doctor at MGM Hospital.

He called him.

Then he called me and said, speak to him. He can help.

When the whole world around you is dark, even the faintest light becomes direction.

And that is exactly what happened.

In that brief half an hour, my mother, my father, myself, my sister from Canada, my husband -all of us had called this Doctor to request him to save Neil somehow!

Enter Neil’s angel.

Neil’s favourite Don Doctor.

Dr. Dinesh Babu – Chief of Anaesthesia – MGM Hospital, Chennai

His words reached us like life being spoken back into a dead room.

“The baby will live. Bring him to Chennai.”

Those words meant everything! We wouldn’t forget.

Day 43 was not the end.

It was the day Neil’s fight truly began.

And Dr. Dinesh Babu would become far more than just a doctor in Neil’s fight.

He was the hope when hope had been taken away. He was the courage when we had none left. He was the hand that did not let go of Neil when the world had already stepped back and kept stepping back.

And that is where the next chapter will begin.

Next Chapter – Chennai – The hope that Neil found.

Dr. Dinesh Babu, Chief of Anaesthesia, MGM Hospital, Chennai.

And from the moment he entered Neil’s story, everything began to change.

It was around 5:30 p.m. on 18th October 2024 when we called him.

We were not calling from a place of clarity.
We were calling from a place of collapse.

We had just been told that Neil’s entire small intestine was affected.
We had just been asked to think about taking him home… to pass away on the way.
Or to sign a paper… to stop care.

We were broken.

And then, somewhere in that darkness, a number was found. A call was made.

And on the other side… was a man who did not speak to us like it was the end

He just said, “Bring him here.”

That was it.

No hesitation.
No confusion.
No “let’s see.”
No “maybe.”

Just, bring him to Chennai.

And when he said those words, we did not think for even a second. We held on to them like life had just been spoken back into the room.

We immediately went to the NICU doctors and told them that we were planning to move the baby.

On 18th October, during surgery, the doctors had found that Neil’s entire small intestine was severely affected by infection. Only around 10–12 cm looked potentially healthy.

But they had not removed the infected bowel.

They had stitched him back… with the diseased intestine still inside.

When Dr. Dinesh took charge over the phone, everything became clear.

He spoke to the paediatrician.

Direct. Precise.

“Take him back to OT.”
“Remove the infected intestine.”
“Retain only the healthy 10–12 cm.”
“Create a stoma.”
“Prepare the baby for shifting.”

The paediatrician hesitated.

“This is risky… he’s too small… another surgery within 24 hours…”

“The baby could go into shock.”

And then came the sentence we will never forget.

“He is at risk with that intestine inside him as well. Do you have any other choice?”

That question changed everything.

Because it was true.

He was at risk if they operated.
He was at risk if they did not operate.

But only one of those risks gave him a chance to live.

In that moment, even the doctors knew.

This was not a random opinion.

This was Dr. Dinesh.

A man who understood what was at stake, and who understood it far better than anyone around us at that time.

He then explained the plan to us.

Neil would undergo surgery again the very next morning.

The infected intestine would be removed.

He would first be stabilised in Bangalore.

Only after:

• coming off ionotropes (blood pressure support)
• coming off oxygen support
• and becoming stable

…would he be shifted to Chennai.

For someone outside the medical world, these words meant nothing to us at first.

But we slowly learnt what they meant because Neil’s life depended on us understanding them.

Ionotropes are medicines that support blood pressure and circulation when the body is too sick to maintain them on its own.

So when we were told he had to come off ionotropes before transport, it meant his tiny body first had to prove it could sustain itself enough for a long transfer.

And suddenly…

The same doctors who had asked us to stop care…
were now concerned about shifting him.

Risky?

Riskier than let him dying there?

We had our answer.

That night, we went inside the NICU to speak to Neil.

“We are not giving up on you.”
“You are the strongest little boy”

“We are so proud of you”

“Hold on.”
“There is hope.”
“You are not going anywhere.”

He was still intubated from surgery. Machines were breathing for him.

And then…

he moved.

A small movement of his leg.

That tiny movement meant everything to us.

It felt like he was telling us, I am still here.

We held on to that sign.

Day 44 — 19th October 2024.

Morning. 5:30 a.m.

The surgeon arrived.

He explained the protocols.

He told us this was going to be a risky surgery.

He told us taking Neil back to the OT so quickly after the previous surgery could push his body into shock.

None of those words were easy to hear.

But we were no longer in a place where “easy” mattered.

We were not ready to sign a paper that said STOP CARE.

So, the consent forms for surgery came back.

Again.

And Neil went into the OT once more.

For the third time.

That sentence still shakes me.

Other parents count feeds, milestones, first smiles.

We were counting surgeries.

We waited.

Two hours.

Every surgery changes time.

The clock moves, but your body does not.

You stand still in fear, hope, exhaustion, prayer, everything at once.

When the surgeon came out, he showed us the intestine.

Infected.
Damaged.
Removed.

Only 10-15 cm remained.

Ten centimetres.

That number became our reality.

To understand that…

A newborn’s intestine is about 100–120 cm long.

Neil now had 10-15 cm.

Not a reduction.

A survival edge.

Neil was brought out of the OT and stabilised.

And almost immediately, the next steps began.

We called Dr. Dinesh.

Updated him.

“Give it 3–4 days.”
“Let him stabilise.”
“We will bring him.”

And just like that…

we moved from fear…

to planning.

We explored everything.

Air ambulance.
Train ambulance.
Road transport.

At the same time…

Neil was slowly stabilising.

Ionotropes reduced.
Oxygen support improved.
He was moving toward room air.

We kept updating Dr. Dinesh on every bit of progress.

Then he said something we did not expect.

“I will send our ambulance from here. Just bring the child in the ambulance.”

An 8 to 9 hour journey.

By road.

In an ambulance.

We paused.

But when Dr. Dinesh says something…

you don’t question.

You follow.

That was it.

And then he said.

“Marcus Benjamin from my team will come.”

At that time, it was just a name.

We did not know then how important this Marcus Benjamin would become in Neil’s journey.

We did not know then how much he would do for Neil, or how deeply grateful we would remain to him for the rest of our lives.

But some people enter your life so matter-of-factly, and then go on to leave a mark far beyond what words can repay.

Benjamin brother would become one of those people.

25th October 2024 — Day 49 of Neil’s life.

We got a call from Dr. Dinesh.

His team would be arriving in the night.

Neil would be taken to MGM Hospital, Chennai in their ambulance.

We were leaving Bangalore.

We didn’t know for how long.

Days. Months. Years.

We packed anyway.

Both Jerrin and I were working in Bangalore, and I had just begun my entrepreneurial journey.

Moving to Chennai for Neil’s treatment meant stepping away from everything we had built and figuring out how to hold things together.

But grace showed up in the form of people.

We were building our business with our closest friends, Jerrin with Mark, and I with Krishna.

And without a second thought, both of them stepped up and chose to hold the fort for us in Bangalore.

That kind of support…

you never forget.

At that time, another grace sat quietly in the background. My parents had moved to Chennai just two years earlier, and MGM Hospital was close to their home. In that moment, even that felt like a sign. Like God was somehow standing next to Neil.

The whole day passed in completing formalities at the hospital in Bangalore.

But emotionally, we were just waiting.

Waiting for the team to come.

Waiting to hand Neil over to the man who had told us he would get a chance at life.

That sentence had become gold for us.

As the day ended and the night approached, we heard from Dr. Dinesh’s team that they were on the way. Neil was being prepared for transport.

We kept walking around the NICU.
Waiting.
Watching.

Listening for footsteps.

At around 2:00 a.m.

Marcus Benjamin
Dr. Avinash
Sister Shruthi

And that moment stays with me very vividly.

Benjamin Anna walked in first.

Calm. Confident. Composed.

White attire. Gold chain.

And we thought…

this is someone important.

He was accompanied by Dr. Avinash and Sister Shruthi.

These names matter.

They are not side characters in this story.

These are people who would go on to take care of Neil over the next many months.

They became an essential part of his life and therefore of ours.

Some names deserve to be written with weight because of what they came to mean.

These names are among them.

They assessed Neil.

And then, quite unexpectedly, they decided to take a tea break before we started the transfer.

And strangely, that tea break comforted us.

Because they seemed cool.

We did not know whether anything was worrying or not.

We did not know what all they had assessed and understood.

But the fact that they were not visibly panicking helped us breathe.

Their calm steadied the room.

When they came back, the journey began to take shape.

Neil was brought out of the NICU in a crib, and we walked along with him.

We did not know what that journey would hold for us.

But for the first time in a long while, there was hope.

Dim, yes. Fragile, yes. But deeply real.

Outside the hospital, an ambulance was waiting.

We opened it expecting a full NICU transport set-up with some kind of incubator arrangement.

But that is not what we saw.

I looked puzzled.

Neil had just come out of major surgery about six days earlier.

He was tiny. Fragile. Recovering.

How were we going to travel all this way just like this?

And then Dr. Avinash said:

“Just keep him on your lap. He will find comfort.”

And in that instant, I realised something painful.

I had forgotten that I could comfort him.

That is what the NICU does to you.

It teaches you to fear your own warmth.

It makes you think your touch may hurt more than help.

For so long, I had been afraid that even my nearness could cause him pain or discomfort.

I had forgotten my warmth.

I sat inside the ambulance and gently settled him on my lap.

Carefully.

Slowly.

Protectively.

Making sure I would not cause him pain.

Dr. Avinash and Sister Shruthi sat opposite me, continuously monitoring Neil’s vitals throughout the journey.

Benjamin Anna would probably have come in the ambulance with us as well, but at mine and Jerrin’s request, because Jerrin wanted to come in the ambulance, he graciously allowed that and himself sat in the car going ahead of the ambulance.

That gesture stayed with us.

Kindness always stays.

We were set.

The journey began at around 3:00 a.m.

Our friends and family had come to send us off and help us with things before we left.

And then we started.

Ambulances always give us a strange feeling.

We are used to being the ones on the road who make way for them.

Sitting inside one, carrying your baby, praying that he safely crosses every kilometre ahead, is a completely different emotion.

The monitor beeped.
The ambulance moved.
I held Neil.

And he slept.

Like the sweetest, bravest, cutest little boy, he slept.

He seemed to enjoy the movement, as though the rocking of the ambulance was comforting him.

I had thought he might cry. But he slept.

Maybe a mother’s comfort is real.
Maybe I was experiencing it for the first time.
Maybe he felt safe.

I wanted to keep him safe like that forever.

His tiny hands moved.
His legs moved.
Each movement told me he was okay.

I kept looking at him, then at the monitor, then back at him again, checking whether his vitals were alright.

At around 5:00 a.m., the ambulance picked up speed.

The siren came on.

The speed increased.

And we were suddenly really moving.

I held Neil tighter.

And he seemed to enjoy even that.

Still sleeping.
Still resting.
Like he had not slept so deeply in a long time.

Around 8:30 a.m., we reached MGM Hospital, Chennai.

Straight to the PICU.

Everything was new.
The place was new.
The people were new.
We were clueless.

We had walked into a hospital solely on the strength of one call with Dr. Dinesh and the words he had spoken to us.

We stood outside the PICU while the staff settled Neil in, adjusted to all that he had on him, and hydrated him because he had been off fluids through the night and could not be fed.

Then we saw someone going inside the PICU.

He looked at us and said:

“Hello, Dr. Dinesh.”

That was the day we met Neil’s angel for the first time.

He walked swiftly into the PICU and to assess Neil.

That was Day 50 of Neil’s life.

Neil had finally met his Don Doctor Dinesh.

He came out about fifteen minutes later, and we were called into the counselling room.

Every word from that counselling session remains fresh in our memory.

He said, “I have seen the baby. We need to take it phase by phase.”

And then he laid out the plan.

Phase 1 — Stabilising the baby

Neil had gone through too much already.

The first need was to stabilise him.

His body needed support.

His vitals needed to hold.

Phase 2 — Securing a permanent line

He said Neil would need a permanent line called a Hickman catheter.

A Hickman catheter is a long-term central line placed in the chest, with the catheter going into a major vein close to the heart.

This is used when someone needs long-term access for nutrition, medicines, and fluids in a sterile and reliable way.

Neil needed this because of his TPN needs.

And this was another new world opening up before us.

In a person with a functioning gut, nutrition comes through food, digestion, and absorption in the intestine.

But in people with severe bowel loss, that system cannot do its job.

So Total Parenteral Nutrition takes over.

Nutrients are given directly into the bloodstream, bypassing the gut entirely. In simple words, the intestine’s work is being done artificially.

And then he said something that completely stunned us.

“Once the catheter is in place, we will send him home.”

Home?

Was that even possible?

We had a hundred questions.

How do we manage that line at home?
What sterile precautions are needed?
What do we need to learn?
Are we even ready for that?

But he wasn’t done.

Phase 3 — Home TPN and transplant listing

Neil would be managed on TPN at home and put on the list for a small bowel transplant.

Because he had lost such a large part of his bowel, he would need a transplant.

And for Neil, that meant waiting for a paediatric cadaver donor.

That sentence landed with a weight that is difficult to write.

For our baby to live, another baby would have to die.

He also told us that Dr. Anil Vaidya from Cleveland Clinic would be the primary surgeon for the transplant.

At that time, he was in the US and was preparing to come to India to set up intestinal rehabilitation.

Was the timing this precise for a reason?
Was this always a bigger picture we could not yet see?

We did not know.

We just listened.

Phase 4 — Post-transplant care

The six months after transplant would need extremely careful monitoring.

Since Neil was a small baby, this phase would need highly attentive and critical care.

And then Dr. Dinesh said something that stayed with us permanently.

“Mind you, through all these four phases, we are walking on a thin rope. We can fall this side or that side with anything. I want to be very clear about that. I will be upright honest and let you know when we are falling from the rope. You need to be prepared for everything.”

He said that and he left…

No false reassurance.

No empty comfort.

Just honesty.

And strangely, that honesty gave us strength.

Because for the first time, we were not being told to give up.

We were being told how to fight.

By then, words like TPN, home TPN, Hickman line, sterile care, cadaver, transplant had begun to sit inside our lives.

We had officially entered a medical world. We knew the next several months of our lives would be spent learning procedures, terminologies, risks, and possibilities we had never imagined.

AI officially became our medical research partner after that.

We stepped out of the PICU and let the staff do their work. They were cleaning Neil, preparing him, securing a line, hydrating him.

And then the full moral weight of what we had just heard hit us.

A paediatric cadaver meant that if Neil had to live, another baby had to pass away.

What kind of prayer do you even make for something like that?

What kind of moral dilemma is that?

How do you ask for your child’s life, knowing what it may require?

We stood there in Chennai, at the beginning of a journey we had never imagined, with fear, confusion, and hope all living inside us at once.

But one thing was very clear.

It was my Neiloo.
My strongest warrior.
The baby who had held on through surgeries, an ambulance ride, and impossible odds.

He was not going so soon.

We had officially begun our Chennai journey….

And Neil had found the man who would become far more than his doctor…

P.S. After his Dussehra outfit photo, I stopped taking pictures. Maybe it was fear, maybe it was just everything happening too quickly… but I couldn’t bring myself to capture more.

The next set of pictures we have of Neil are different.
They are our treasure.
Moments we hold on to… of him in his full glory.

Looking back now, Chennai never feels like a coincidence.

My parents had moved from Delhi to Chennai in 2023. At that time, it was just a decision. But in the larger picture, it felt like it had been chosen for Neil. The house was close to MGM Hospital. We did not have to think about relocation, logistics, or where we would stay. In the middle of everything that was falling apart, this one thing stood steady.

Jerrin said something that stayed with me.

On 18th October 2024, when Neil was written off in Bangalore, one voice brought us to Chennai. And that date, October 18, is the feast day of St. Luke, the patron saint of medical professionals. The church closest to our home in Chennai was St. Luke’s Church, Anna Nagar.

We held on to these things.

As signs.
As reassurance.
As quiet reminders that maybe we were not alone in this.

We were sitting outside the PICU, trying to understand what this journey would even look like, when we met the first set of doctors who would take care of Neil in Chennai – Dr. Kalaimaran, Dr. Monisha, Dr. Mano, and Dr. Yazhmozhi.

These names are not just names in passing.

They were the first people who received Neil into this new phase. They stabilised him, managed his lines, ensured his hydration, and carefully watched his vitals. There was a sense of structure here. Not just reacting to what was happening, but working with a system.

While Neil was being stabilised, something far more critical was being built in the background.

His survival plan.

That plan was TPN: Total Parenteral Nutrition.

But what we saw unfold was not just nutrition being given. It was precision. Calculation. Control.

Dr. Dinesh and Dr. Nivash Chandrasekharan kept coming in, again and again, assessing Neil. His weight. His electrolytes. His fluid balance. His outputs. Every parameter mattered.

Nothing was assumed.

Everything was measured.

And slowly, we began to understand, this was not support.

This was survival.

Gratitude note for Late Dr. Nivash Chandrasekharan – Anaesthesiologist

There are some people who don’t make noise when they enter your life, but quietly change everything.

Dr. Nivash was one of them.

He carried a calm that never shook. A clarity that didn’t need explanation. Paediatrics, for him, felt instinctive. Effortless.

But what stood out was his attention to detail.

The way he worked on Neil’s TPN plan was something we had never seen before. Every component was thought through, how much nutrition, how much fluid, what the body could tolerate that day, what needed to be adjusted the next. He didn’t just create a plan. He kept refining it, ensuring it worked for Neil, not just in theory, but in reality.

Looking back now, we realise that plan held Neil together.

It gave his body a chance to stabilise when nothing else could.

And maybe that is why his passing in January 2026 felt like a shock we were not prepared for.

Because to us, he was not just a doctor.

He was someone who quietly became part of Neil’s fight.

And what he did for Neil… will stay with us forever.

27th October 2024 — The Line That Would Sustain Him

Then came the next step.

The Hickman catheter.

When Dr. Dinesh said Neil was ready for a long-term line, we knew this was not just another procedure. This was a shift.

Neil no longer had the intestine required to absorb nutrition the way the body is designed to. Food, digestion, absorption, everything that sustains life naturally, was no longer possible for him.

So his body needed another way.

That way was TPN.

Nutrition delivered directly into the bloodstream.

And for that, the line had to be perfect.

Dr. Dinesh explained it to us.

The catheter would be placed on the right side of his chest. It would travel through his vein and sit close to his heart. This was not just a tube. This was direct access into his bloodstream. Direct access into life.

But along with that came something we were clearly told.

Infection would be our biggest enemy.

I remember Dr. Mano telling us, “In this entire journey, infection will be your only enemy. Everything else can be managed.”

At that time, we heard it.

Later, we lived it.

The procedure itself was considered routine.

But Neil was not routine.

He was tiny. Fragile. Recovering from multiple surgeries.

Which meant general anesthesia.

Which meant… OT again.

But this time, something inside us was calmer.

Because Dr. Dinesh was doing the procedure.

And that changed everything.

Benjamin Anna was going to be there too.

By then, Benjamin brother had already become someone whose presence itself gave comfort. He didn’t over-explain. He didn’t dramatise. He just carried a confidence that made you feel things were under control.

We had even started calling Dr. Dinesh and Benjamin brother — Ranga and Amban.(From the movie Aavesham)

Because that’s what they felt like.

A force you trusted without question.

Neil went in.

We waited.

And when we were told the line was secured, it felt like we had crossed something important.

Because this line meant one thing.

Neil could now be sustained.

Neil came out of the OT.

Tired. Quiet.

But then he made sounds.

Small sounds.

And those sounds became our strength.

Yes, he was in pain.

But that boy had a way of making pain look small.

We talk about strength.

We were watching it.

31st October 2024 — Diwali

The world was celebrating.

Lights. Happiness. Noise.

And our light…

our son-shine…

was in the PICU.

We bought him a small “My First Diwali” onesie.

The nurses helped us dress him.

Helped us take pictures.

And while the world celebrated outside…

we had just one wish.

One day…

he should celebrate like every other child.

2nd November — When Surgery Returned Again

On 19th October, 2024, when Neil had his 3rd surgery, the major resection, Neil was sent to Chennai with a stomal opening.

The purpose was simple. The bile, a highly acidic digestive fluid, needed a way to exit. Without movement, it could damage the body.

The stoma was meant to protect him.

But when we reached MGM, we noticed something was wrong.

There was no output.

No output from the stoma meant the system was not working.

And we had seen this before. And it did not lead to anything good then.

We were told a paediatric surgeon would review him.

Even hearing the word “surgeon” had started to hurt.

That evening, Dr. Bala Mourugane came in. He was the paediatric consultant surgeon from the Mehta Hospital.

He spent close to an hour or may be more going through everything: The records, the X-rays, scans, Neil himself.

We sat outside, waiting, not knowing what would come next. When someone takes that long, we did not what to expect, the good or the bad? or by now our minds were tuned to thinking it would be bad..

When he called us in, he spoke slowly.

Clearly.

The stoma not functioning was a serious concern.

Especially if Neil had to be managed at home.

There were only two options.

Reconnect the intestine to the colon, allowing bile to pass naturally.

But this would cause severe excoriation, burning, rawness, pain around the anal region due to the acidity.

Or recreate the stoma by removing the block, which meant another external opening.

Either way…

there was no avoiding surgery.

And the reality hit us again.

Neil had just undergone a procedure.

Just three days back.

And here we were…

preparing him again.

But this time, something was different.

We had doctors who believed in him.

Who believed he could take it.

Dr. Dinesh said one thing.

“We need to do this.”

And from that moment…

we stopped questioning.

Dr. Dinesh says, we do. Period.

3rd November: The Surgery

Neil weighed around 1.7 kgs.

Tiny. Healing. Fragile.

And yet…

he went in again.

This was his fourth open surgery.

We stood outside the OT.

Waiting.

Six hours.

When the doctor came out, the first thing he said was:

“Neil is one strong boy. Honestly, when I went in, I was hopeless. But he gave me the strength. He held on.”

That was Neil.

Always holding on.

The bowel had been connected to the colon.

No stoma.

No external opening.

It gave us a small sense of relief.

Yes, there would be excoriation. Yes, there would be pain.

But in the larger picture…

this felt manageable.

For the first time…

we saw progress through surgery.

Neil came out.

Swollen. Tired.

Every anesthesia took a toll.

Every procedure left a mark.

I saw the big big stitches on his abdomen.

And something inside me broke.

How much can one tiny body take?

But even then…

we believed.

Somewhere…

God would not leave his side.

7th November – A Shift

We were told Neil would be moved to the ward.

Ward?

We had only known ICUs.

But by then, something had changed in us too.

We understood monitor beeps.
We observed medications.
We tracked everything.

Because we knew…

we were preparing for something bigger.

Taking him home.

The system Dr. Dinesh and his team built amazed us.

Everything was arranged.

Sterile environment.
IV stand.
Infusion pumps.
TPN supplies.
Monitoring setup.

All of it.

In a day.

Our home transformed.

My parents adapted instantly.

They bought an AC for Neil.
An inverter for Neil.

Everything became about Neil’s comfort.

And somehow…

everything fell into place.

9th November 2024 — Home

Discharge day.

We knew life was changing.

We were no longer just parents.

We were caregivers.

Dr. Dinesh explained everything.

His system was clear.

We would not touch the line.

His team would manage it.

But we had to learn.

Observe.

Be ready.

And then…

it was happening…

I lifted Neil.

Carefully.

Protecting his stitches.

For the first time…

he sat in our car.

That moment…

felt like everything.

We had forgotten firsts were possible.

Dr. Dinesh brought them back.

We reached home.

My mother stood there…

with an aarathi plate.

And then…

Neil entered our home.

For the first time since his birth.

And that moment…

felt like forever.